How long have you been on this journey?


My son is 26. He started exhibiting symptoms when he was in high school. I at first thought it was drugs. We found out that it was mental. So about 10 years now. But looking back I wonder if he was even younger with symptoms. He was ADHD, and I find that a common thread for a lot of mental illness.


Symptoms started at age 17. We thought it was teen rebellion, questionable friends, and drug experimentation. The diagnosis was made at age 22. He is now 32–so 15 years all told.

If I could go back to the beginning, I still don’t know if I would have been able to distinguish all the signs because in the beginning he was a teen and there is so much teen drama. But after the first diagnosis I would have tried to be more proactive–learned more on how to handle delusions.

Our reaction to their strange new world is definitely a game changer. Because the level of trust changes not based on what they do, but how we handle it. So it took years before he could trust me to tell me what he really thinks. Even now there are times he cannot fully trust me to share his thoughts. I let him know that is ok. He can decide what to share.

I also have learned MI people do understand boundaries. When I say this, I mean MI people who are not self-medicating with drugs or alcohol. Add those to the mix, and I have found them to be fully unreasonable. This is truly crisis mode. Even without that you may experience a crisis just because of the illness. So have a crisis plan in place before a crisis hits. The rest of the time, well, they are people you love who are different. Don’t be condescending but treat them with respect. It is ok to let them know your limits. They still have feelings. The still can show love and respect in return. For example: Last week I was having a bit of drama with mom who has Alzheimer Dementia. He thought I was being mean to her and I explained my stress- perhaps in a loud voice. After dropping mom off, I returned home and he had cleaned moms floor and was working on mine. My sweet compassionate son is still there just in a different way. One the rest of the world considers to be odd. And after 15 years, I am ok with that.


I would too @Hereandhere. I would too :heart:


Right? My son does drugs too…and I have no clue if he got ill from drugs or was ill and did the drugs…in the begining however he wasnt doing drugs like he does now …any drugs but his drug of choice is meth…he has sz and is 27 …been dealing with it since he was 17…


My son is only 14, and he was diagnosed after his first big psychotic episode in February, 2 months ago. However, we have known something was going on with him for a long time. We adopted him at 3 months old & everything was perfectly normal until he was about 4. He never outgrew tantrums - they raged on for 2, 3, 4 hours. He hated going to storytime at the library, music together, anywhere there were a lot of people. He was very bright but never liked school. Got angry about everyday transitions: “It’s time for dinner!” could set off a 3-hour tantrum. He’s been in counseling since 5 years old, & has been diagnosed with ADHD, oppositional disorder, depression, etc. But he did well in school, always had friends, was talented in art, liked animals & the outdoors.
Then in middle school, things started going downhill. He started refusing to go to school & to do other activities. We got an IEP & he was put on medication. He started in a special high school program in September & seemed to be doing okay academically, but his behavior got stranger. He started refusing to shower or get his hair cut, and obsessing about violent topics. Then we discovered he was cutting. Soon after that, he had his psychotic break.
We are still learning how to help him and what we can & cannot expect. Fortunately my husband and I are both special ed teachers (I am retired, but he is an administrator) so we know how to deal with the system better than most people. However, in no way did it prepare us for the emotional toll this would take on us. He is our only child and we love him very much, and it is tearing us apart to see what is happening to him, and we are very much afraid of what the future will bring. We are trying to take things a day at a time, and I am resolved never to give up on him.


Your story sounds so much like ours! My son is 14, adopted at 8 months. Always an intense kid, but had friends and could function at school. In fifth grade he admitted to hearing voices and went on medication. He could be seen as stable (taking max dose of Geodon), but is barely making it through 8th grade, snd sometimes says very creepy/scary things. I don’t know what the future holds. Sending you positive thoughts and hope for stability and peace of mind.


I knew that their was something wrong almost from birth.She was sick all the time with hight fever monthly.She was the little girl who was never invited to the birthday parties at school.I had to pick up every day for lunch for she had no friends.If I could not get her some days she would sit by herself in the Library.She had no friends and was pick on even to and from school on the bus.She had no one she had her first full blown attack at 28 She was angry with me and did not want to see me.I had got a call from the hospital who said she was in the lock down unit.The land lord was showing her apartment and she was in bed which she was in for days with out food or water .She was really dehydrated when ambulance pick her up she was in pshycosis.It has been a long journey, she is now 38 yrs.old.My advice I would give myself is try to encourage her to read her signs everyday that she has in a book to see if everything is runnin g smooth or keep an eye on whats not and know when to sound the alarm and go to the hospital


My Journey with this beast started about 5 years ago. We have had a few ups and downs but my son is finally med compliant and doing well (2 years now). Looking back I have learned that I can deal with this illness. I have not had to deal with the drugs but did deal with him trying to kill me and I have had to deal with this journey alone. Along the way I learned that I am a lot stronger than I ever thought I was because of my faith in God that has grown stronger through this journey. Looking back my only regret would be not realizing that the little odd things he was doing were a real issue and not just a young adult thing.


I would also have described my son as ‘intense’ from an early age. It was recognized around 4 years old that ‘something’ was going on. One psychiatrist said he thought my son would likely have a mood disorder when he grew up. He spent a couple of teen years at a boarding school, when I found it impossible to deal with the damage and defiance, and his dad wasnt able to either. He was on Seroquel most of that time, which may have kept more symptoms at bay. He stopped taking them when he left the boarding school and went to live with his dad. A semester after he left the boarding school, he began experimenting with drugs. A year later, he had what was recognized as his first psychotic break. That was about 10 years ago.
His dad put him on a plane and sent him to me 7 years ago. Had some rough years of non-compliance and in and out of the hospital. Currently he has been in a house I purchased for him to “rent” for 3 years, and is med-compliant, though he relies on me for a lot.
Like @dontforget623, sometimes I am really surprised that I am still standing after all we have been thru, and know I have more inner strength than I ever imagined possible.
I have some regret for the time my son spent away at the boarding school, but I know we did what we felt was the best option at the time.


My journey with my son was very similar to what you are describing!


Dear Family, this is my first post and I wondered if I should post in the topic “How to deal with the sadness of my son’s …” or here. I guess either way would work. My beautiful, talented, popular son had his first known psychotic break just before the age of 21 and he turned 26 last week. Needless to say, our life has never been the same since. I have read and been comforted, supported, and educated by your comments for almost 5 years as I have sought answers and information to help us. I find it so hard to comment or write more and that’s why I have never posted before. I just want you all to know how much I appreciate your information and sharing your life and struggles. I have been to many schizophrenia related blogs and have never found such an authentic, caring, group as you. Perhaps I will be able to write more later. Regardless, I will continue to read everything and appreciate you more than you will know. Thank you all.


My son was smart happy kid until he was about 15 and started smoking weed. He became very angry the next couple of years and was always threatening suicide. I was always very afraid for him as he did get violent with me sometimes and would I would call the police when he threatened suicide and he was hospitalized once in high school in the suicide ward. It was a horrible rough ride to get him committed and get him help and I never thought I would have the strength to do all this. My son is 22 now and med compliant, but has no motivation and isolates himself, but we have come a long way.


I’m glad that you posted @takingachance. I think everyone here can relate to having times that we just can’t post. I know for myself, I come on this site often but some days it is too overwhelming and painful to read or comment on, some of the situations people are in. Those are usually during the “downs” of this roller coaster ride that we are on. But as the ride starts going “up” again (not trying to make it sound fun, you know what I mean), I have more to give people. That’s all ok, and safe to do here. Keep taking a chance now, and reaching out when you can. All of us here are in a similar boat, and we get it.


I love the forum, but during difficult times, I don’t read it or post. Too much work just trying to get through each day.


I really am glad I found the forum and check it nearly every day, sometimes 2 or 3 times a day.


You have my same story! Hang in there!


I started the “sadness” topic a long time ago! Thank you for your post. I too am so grateful for everyone for sharing. I don’t post often, but I too check in once in a while to get some comfort here, and to feel not so alone. Blessings to all xoxoxox


Same here it’s sometimes too difficult to post on the down times but just knowing your all there gives me so much hope and so much support , thanks guys for just being there :heart:


I do also. My grandson was adhd and he tells me he has felt different all his life.


Just read an amazing book , I’m not sick i dont need help ! Xavier Amador,phd , A MUST READ ! My son and i are much closer following the ‘LEAP’ rules listen ,emphasize, agree, partner
This book gave me peace and comfort and helped me understand how to handle my son who has anosognosia (no insight of his condition) It has stopped arguments between us and instead brought us much closer.